Thursday, July 31, 2014

Expert patients versus doctors

Most patients hope that their doctor will provide them with both medical expertise and empathy. We want a blend of scientific skill and emotional support – a sharp mind , as well as a shoulder to cry on.

While we cannot critically judge a doctor’s scientific expertise, we trust that he knows a lot about medical science because he has been certified as being competent after going through medical college , lots of examinations, and many years of training. We use his medical degree certificate as a marker for his technical competence, and believe that this stamp of approval means he is qualified and up-to-date . We use additional surrogate markers to confirm our beliefs ( for example, has he published medical journal articles ? authored a text book ? is he interviewed as an expert by the media ?)

Sadly, just the fact that the doctor has a medical degree certificate means very little today. Many of these doctors have passed out from private capitation colleges, where the only language which the faculty speaks is that of money. What matters is not your IQ or your hard work – it’s just the size of your ( father's) bank balance. Degrees are available for sale, and are no longer a trusted badge of competence ( and if you don’t believe me, ask a family member who is a doctor what their frank opinion is about the quality of the medical graduates who are passing out these days).

However, old is not always gold either. Many of the old timers continue to practice inspite of the fact that their medical knowledgebase is outdated and obsolete. They can be equally dangerous because their clinical skills have atrophied over time , and they have failed to keep upto date with recent advances.

This is why patients are often forced to blindly trust the scientific competence of their doctor. However, it’s hard to do so , especially because the medical profession seems to have frittered away the trust which people used to have in it.

Doctors are often treated with suspicion . At the back of the mind, the patient is always worried – is the doctor advising these tests in my best interest , or in the interest of his bank balance ? This is why we spend so much time and energy in finding the right doctor.

While some of us get lucky, we don’t need to feel helpless. Just like the passage of time has created new problems , it has also thrown up new solutions as well. Today there is a  whole group of people who can provide us with exactly the same level of medical expertise which doctors can. The only difference is that they don't have the paper degrees which doctors have .

These are what I call the Expert Patients, and their community is increasing daily. Often, they will do a much better job than a doctor can, for many reasons.

Depth of knowledge about your particular illness.
While the world-renowned specialist in Mayo Clinic maybe the final medical authority on your disease, how do you know how much your personal doctor knows about your illness ? Doctors cannot be experts on everything – and many specialists are also clueless about rare problems ( even though they may not be willing to be forthright and share their ignorance with you.) However, the expert patient who has your particular illness will know a lot about it, because he has chosen to master the intricacies of the topic.

No medical gobbledygook .
Expert patients will talk to you in terms you can understand. They will not use jargon – and neither will they dumb stuff down or talk down to you. They respect your ability to understand, and will help you to become an expert as well.

Expert patients are likely to be far more empathetic , because they've been through what you are going through.

Honest advise.
Because they have no vested financial interest , they will provide you with the right advise.

Even better, because you know you are now talking to a peer rather than a doctor, you are much more willing to ask questions , and work with the expert patient  to drill down to find the answers which are right  for you. The expert patient respects your intelligence and autonomy and will help you in your quest to find what is right for you. He will act as a coach – not just as a fountain of wisdom.

This is why you can trust these expert patients. While they have always been around, today, thanks to the internet, it’s much easier to find them, no matter how rare your illness is. Many expert patients have their own blogs and websites ; and many are very active on forums and bulletin boards.

Since they are willing to express their opinion online, it’s fairly easy to make out whether the expert patient knows what they're talking about , or is completely clueless .

Many of these patients can be extremely knowledgeable about a particular illness . Many times their knowledge would put a doctor to shame , because they spend so much time in researching their problem. They are generous , and are willing to share the fruits of their knowledge with others.

Many have a biological background , and because of their single-minded focus, can actually spend much more time on your particular problem than your doctor – even if they live half way across the world.

They can help you to:

  • make sense of your test reports ; 
  • do research about your treatment options ;
  • get a second opinion; 
  • find the right specialist.

Smart patients will make use of all possible resources which are available today ; and while this includes doctors and the medical system , it should also include the network of expert patients who are now available online in practically every disease you can name.

Obviously not all expert patients are reliable. Some have a hidden commercial agenda ( because they are sponsored by a pharmaceutical company); others don't understand the big picture , and cannot interpret your information in the right context . Because they don't have professional training, some are very biased and try to extrapolate from their personal experience , to everyone who asks them for advise. They naively believe that what worked for them will also work for everyone else as well !

However, the incompetent expert patient is far less dangerous than the incompetent doctor. Doctors have an aura associated with them , because of their professional status, and we are very scared to challenge our doctor or to push back against his advise, even when we don’t agree with it

On the other hand, we are likely to be much more skeptical about what an expert patient says, and we do our own research to verify his statements. By the quality of their answers, we are in a better position to judge exactly how reliable they are. Even better, because the expert patient cannot actually prescribe medicines or treat us, the harm he can do is very limited. His primary role is to act as a patient advocate, and speak up for the patient.

What happens if the doctor's advise and the expert patient's advise differ ? This is actually a healthy situation, because it emphasises the fact that the patient has more than one option, and he needs to apply his mind and choose what is right for himself.  In fact, an expert patient's advise is often more valuable than another specialist's second opinion (  most specialists tends to provide similar advise, as their perspective is coloured because they are professionals who tend to think along the same lines ).

We need to remember that this is not a confrontation ! In fact, smart doctors often refer their patients to expert patients !  Expert patients and doctors have complementary skills, and clever patients learn to make the best of both. We are all on the same side - the patient ’s !

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